One of the aims of the #LBBill is to push the State to be more acknowledging, more respectful of the input of families & allies into the lives of disabled people, post 18. The current attitude of the State is pretty piss poor. The most common responses of the State towards families range from being totally ignored, humoured, to being met with suspicion or downright hostility.
This attitude doesnt make any sense to me. Surely all the evidence is that families become even more important post 18. Just supposing that on the person’s 18th birthday, every family announced that they were downing tools. The State would implode.
For people with autism, routine is so crucial and for the most part between the ages of 5 and 18, that routine is provided by the routine of school. When school ends, a whole new routine needs to be built and it is solely down to the family to facilitate and maintain the new routines. Nobody else can do it. And it becomes a lifetime’s job from 18 until the family carer is no longer around.
At 18, you get caught up in the lie that is “transition into adult services”. There are no services. There is no transition. But you become distracted by this imaginary process at a time when your energy needs to be focused elsewhere – helping your 18 year old build a new life. I remember Steven’s old social worker, Whistler’s Mother, giving me a wad of handouts of ” things Steven might like to get involved with”. Most of them had been photocopied so many times they were unreadable. Most related to children’s services. A handful related to events he could do once or twice a year. Out of 60 odd pages, there wasn’t one that could be used to build a new routine.
The reliance on families by the State is huge. I’ve written many times before that for personalisation to work, the expectation on the family’s input is massive. You become an employer. You have to run a payroll. You have to recruit staff. Nobody else will do it. If families didn’t do it, personalisation would collapse.
A family member’s life changes dramatically when your son or daughter hits 18 as well. I was lucky, being self employed, that I could chose the hours I worked. But overnight, I suddenly had to reduce my working hours considerably. There was no support and Steven needs 24 hour support. Even with his “gold standard package”, I still can’t work more than 25 hours per week.
The other problematic area is that a whole lifetime of experience suddenly counts for nothing. Knowledge, memories, built relationships are suddenly seen as threatening rather than the foundation stones they should be. It is deeply confusing for the family because, on the whole, during childhood your input is valued by the State. Upon the arrival of an 18th birthday card, you become a nobody in a nothing system.
This isn’t meant to be a whinge post. I love my role in Steven’s life and know it couldn’t be any other way. But roll on #LBBill and a day when the State recognises the reality of life for the over 18s of the social care world and their families.
From → Social Care